Who is Affected by Lower What Support is Available? Limb Dystonia? What is Lower Limb Dystonia? The Dystonia Medical Research Foundation Dystonia affects men, women, and children Dystonia is a neurological disorder that (DMRF) can provide educational resources, of all ages and backgrounds. In children, causes involuntary muscle contractions. self-help opportunities, contact with others, lower limb dystonia may be an early symp - These muscle contractions result in volunteer opportunities, and connection to tom of an inherited dystonia. In these cases , abnormal movements and postures, the greater dystonia community. Lower Limb the dystonia may eventually generalize to making it difficult for individuals to Dystonia affect additional areas of the body. Children control their body movements. The What is the DMRF? with cerebral palsy may have limb dystonia, movements and postures may be painful . The Dystonia Medical Research Foundation often with spasticity (muscle tightness and Dystonic movements are typically (DMRF) is a 501(c)3 non-profit organizatio n rigidity). Lower limb dystonia in children patterned and repetitive. that funds medical research toward a cure, may be misdiagnosed as club foot, leading promotes awareness and education, and to unnecessary orthopedic procedures that Lower limb dystonia refers to dystonic supports the well being of affected individuals can worsen dystonia. movements and postures in the leg, foot , and families. and/or toes. It may also be referred to as When seen in adults, lower limb dystonia focal dystonia of the foot or leg. Individ - seems to affect women more often than men. uals often have to adapt their gait while To learn more about dystonia Age of onset is typically in the mid-40s. walking or running to compensate for the and the DMRF, contact: Symptoms may develop after periods of dystonic symptoms, and/or may require Dystonia Medical prolonged exercise, for example long-dis - the assistance of mobility devices such Research Foundation tance running or long-distance walking. as crutches, walkers, or wheelchairs. One East Wacker Drive, Suite 1730 Symptoms are often triggered by running, Chicago, Illinois 60601-1980 walking, or standing but may be absent at Ironically, symptoms of lower limb dys - Phone: 312-755-0198 rest. Electrolyte disturbances and disorders tonia may occur while walking forwards , Toll free: 800-377-DYST (3978) Email: [email protected] of energy metabolism must be ruled out but improve or disappear when walking Web: www.dystonia-foundation.org if symptoms occur only with exertion backwards. Some individuals may be able Connect with the DMRF on Facebook, and fatigue. to temporarily lessen symptoms with a Twitter, and YouTube. ‘sensory trick’ to another part of the body, such as gently touching the face or head.

Lower limb dystonia is frequently misdiagnosed, sometimes mistaken for other gait disorders, orthopedic and structural conditions, and psychiatric Special thanks to Shabbir Merchant, MD disturbance. for reviewing this content.

© Dystonia Medical Research Foundation 2018 movement disorder or functional neurological What Treatments are Available? dystonia with some success. Functional Common Symptoms of symptom disorder (conversion disorder). Many Treatment to lessen dystonia symptoms electrical stimulation devices were originally Lower Limb Dystonia people with functional movement disorders may require a combination of approaches. developed for use in other gait disorders, • Foot rolls outward so that the sole experience a mix of motor symptoms including The goal of treatment is to improve a person’s but may be helpful for select individuals faces inward dystonia, tremor, gait disorders, and tics. ability to function and move more freely. with lower limb dystonia. • Foot or leg turns inward They may also experience weakness, sensory Regular botulinum neurotoxin injections • Foot points downward symptoms, non-epileptic seizures, and administered by a qualified medical expert Individuals with dystonia frequently • Extension of big toe other functional neurological symptoms. are among the most effective therapies to experience depression and anxiety disorders. • Toe curling help relax dystonic muscles and alleviate the Evaluation and treatment for mental health • A sense of tightness or stiffness in Dystonia is not a typical early symptom of abnormal movements and postures. Oral disorders may be an important part of a the limb Parkinson’s disease but, in rare cases, lower medications such as anticholinergics, baclofen , beneficial treatment plan. • Changes in walking or running gait limb dystonia appears to be an early sign of and/or benzodiazepines may also be used for certain parkinsonian conditions. For example, this purpose. Deep brain stimulation surgery Living with Dystonia toe pointing or curling triggered by exercise may be an option for select patients, especially Adjusting to life with lower limb dystonia What is the Cause? has been documented in individuals ultimately for inherited dystonia which can progress to can be challenging and require significant For many adults who develop lower limb diagnosed with young-onset Parkinson’s generalized dystonia. changes to a person’s activities and lifestyle , dystonia, there is no identifiable cause disease, which is seen in individuals under but living well is possible. The early stages and it is not associated with additional the age of 50. Physical therapy and/or occupational therapy of symptom onset, diagnosis, and seeking neurological disease. may improve overall daily functioning. Part of effective treatment are often the most Lower limb dystonia may also occur as part the treatment plan may involve using orthotics challenging. Once a treatment plan is However, there are a number of conditions of generalized dystonia, for example inherited (wearable medical products or devices) to help established, individuals can find new that are known to cause lower limb dystonia. disorders such as early-onset (DYT1) dystonia lessen symptoms and make it easier or more and innovative ways to stay active and These include brain injury, stroke, or injury and dopa-responsive dystonia. comfortable to walk. Case reports have demon - engaged in daily living. to the limb. A fixed position of the foot may strated success with using computer-assisted suggest that the dystonia was acquired from What Kind of Doctor Treats Dystonia? gait analysis to customize an orthotic specific Individuals and families living with an injury or underlying cause. Fixed foot Individuals with dystonia are encouraged to a patient’s needs. Orthotic options may dystonia are strongly encouraged to: dystonia may also be associated with a pain to seek treatment from a neurologist with include ankle brace, toe spreaders, rocker • Seek treatment from a neurologist syndrome following an injury called complex special training in movement disorders. A bottom shoes, platform or raised heels, or a who specializes in movement disorders. regional pain syndrome or reflex sympathetic movement disorder specialist can diagnose— combination of these. A light weight ankle • Learn about dystonia and treatments. dystrophy. In some of these cases, the or rule out—lower limb dystonia and assess foot orthotic may worsen dystonia in some • Develop a support system of support dystonia occurs before the onset of the any possible underlying causes. A team of and improve walking in others. groups, online resources, friends, family, pain syndrome. medical professionals with various specialties and mental health professionals, if needed. may be appropriate to tailor treatment to Physicians and rehabilitation therapists • Investigate complementary therapies. In some individuals, fixed foot dystonia is the specific needs of the individual. are beginning to explore the use of wearable • Get active within the dystonia community. a symptom of a functional (psychogenic) stimulation devices to reduce lower limb